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Roselove
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05 Jul 2018, 1:40 am

I posted this to the woman’s board, but it didn’t seem like people get on there as much as this forum, so I thought I’d just repost it here.
I just was wondering if I could get some advice.
I’m about to be 23, I was diagnosed with Aspergers about a year ago.
When I was growing up, I had issues with hearing loud or strange noises, was very shy, had a quirky/“annoying” personality, didn’t have many friends (others thought I was weird and I think I also interpreted people as being mean to me when they weren’t, which made making friends even harder), I was paranoid, developed OCD symptoms in early childhood (very scared of getting sick/getting shots, would obsessively count and touch things in a certain order when I’d get anxious, etc.), and I didn’t have good hygiene until I got to be around 16, but still have some issues in that area (I used to just not care/recognize needing it, but I think it’s more depression-related now).
So, the reason I’m explaining this is because at times I get nervous and have doubts about my diagnosis for the following reasons:
I’ve seen a psychologist since I was about 5 years old (various ones) and none of them, including any of my teachers/counselors at school noticed me having autism symptoms.
After my diagnosis, everyone that I told was very surprised, even my friend who works with clients on the spectrum.
I’m in a program for people with disabilities to find a job (jobs have not been successful so far because of my anxiety) and my case worker said that it’s weird because he couldn’t tell that I had Autism, at all. He said my empathy, eye contact, ability to write and speak, do interview roleplaying, etc. where very good and better than what he’s seen others on the spectrum do. My current psycologist said some similar things.
My issue is that, I felt so overwhelmingly relieved when I got the diagnosis, because I finally felt like I had a reason for why my life had, had so many difficulties, but with the stuff I said about what the people around me have been saying, it just makes me worry that I was misdiagnosed. I mean, I’ve had psychological testing done before, it took me finally specifically requesting a test for Autism, to find out.
Idk what to think, the doctor that tested me, said I was between a 1 and 2 (out of 3) on the spectrum, which is also what my online tests I took, told me. So, I apparently am moderately high on the spectrum.
So, what should I think about this? I know women show there’s differently and not to as high of a degree a lot of the time, but it wouldn’t seem that I would be THAT much better at hiding it, than the rest.
Can I get some thoughts/opinions/your experience? I’d really appreciate it :?



Nira
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05 Jul 2018, 2:42 am

Quote:
He said my empathy, eye contact, ability to write and speak, do interview roleplaying, etc. where very good and better than what he’s seen others on the spectrum do. My current psycologist said some similar things.

All Aspies on the support group, I go to, have ability to write and speak and I think most from them have empathy too.

I am sure if I ever told anyone, he would be surprised too.

Quote:
My issue is that, I felt so overwhelmingly relieved when I got the diagnosis, because I finally felt like I had a reason for why my life had, had so many difficulties, but with the stuff I said about what the people around me have been saying, it just makes me worry that I was misdiagnosed. I mean, I’ve had psychological testing done before, it took me finally specifically requesting a test for Autism, to find out.
You can try it again elsewhere where they specialize on ASD. You will see if will be confirmed or not.


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Jensen
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05 Jul 2018, 2:44 am

Hi!
In many - or most ways, this sounds like me. I got my dx at 60 - now five years ago and I also felt an intense relief. At last, I had a valid explanation for my life.

Please don´t have an issue about being relieved to have been diagnosed!

Of course, you can say, what others have been saying about you. Being autistic doesn´t make you that alien.
....and yes! Women are that good at hiding it - and some men as well.
Autistics can be very good actors - such as Anthony Hopkins.

You probably spent your life observing and acting, hoping to "get it right", say the right things in the right tone with the right face on - hoping to blend in.... and you have become very skilled (most of the time).
It was those skills, your caseworker saw - and took for non-autism. Most people have a pretty rough ideas about autism.

Your brain is wired somewhat different from those of most people. That´s all. Enjoy your relief :heart:


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collingford
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05 Jul 2018, 8:39 am

I was searching around for a psychological explanation for my difficulties for several years before one of my two friends, knowing this, suggested I might be on the autistic spectrum. As in your case, it was only when I requested a diagnostic test that any link between me and ASD seemed to be considered by any of the medical professionals I had consulted over several years.

After my assessment, also one year ago, I was told that being diagnosed with only one or two core deficits is not uncommon. The psychologist also said that the number of the core deficits was not to be understood as an index of severity. There is only an arbitrary cut-off point which distinguishes people with ASD from people with less severe sensitivities and deficits around social functioning.

Though I met the diagnostic criteria in all three areas the severity was mild on all three, with some mitigating competences: some eye contact, some references to states of mind, some tolerance of extreme sensations. In my case there was little direct evidence of my behaviour in childhood to base the diagnosis on, so meeting the criteria in all three areas was important to the psychologist in making her feel confident enough to diagnose me with mild ASD.

I feel satisfied with my diagnosis and confident about it because she seemed confident enough and a full report including the above reasoning was related to me verbally afterwards. Six months later (an irritating wait) I received a written copy as well.

In your case clearly there was enough evidence available for the psychologist to feel that ASD is the right diagnosis despite the fact that the diagnostic criteria were only met in some of the core deficit areas (lucky you). But did you get any direct indication from the psychologist of how confident he felt in making your diagnosis? This is a different question again from the severity and the number of core deficits you were diagnosed with. The issue is whether something else altogether could have been underlying your behavioural profile.

Clearly, your psychologist believed that the answer to that was 'No' so I would stick with this conclusion. Also, only meeting diagnostic criteria in one or two core deficits kind of matches up with what people are saying: that you don't have such severe deficits in some of the areas associated with autism. The one you seem to be more severe on, sensitivity to stimuli, has only been recognised for its importance to the underlying condition in recent years as a result of its consistent link with deficits evident in social interaction. This link would be the area to focus on if you wanted to dig into some research into your condition.

My mother used to say that it is always worth getting second opinion on medical matters but she was a hypochondriac and a sociopath. I would pay no heed at all to observers who are not qualified psychologists or psychiatrists. Most people have little notion of what ASD is and find it difficult to understand it when it is explained to them. My friend was only able to advise me after he had been working with autistic youngsters in his job. Your gender is also relevant here because historically the concept of autism had been moulded around males' behaviour, not women's behaviour.

Shortly after receiving the diagnosis I was on a high because all of my problems could be put into this box called ASD and I anticipated receiving help and understanding. It was fun to dig out past experiences, dust them off, examine them in the light of this new perspective and then put them into that box.

It was only after a few months that I realsised that the problems had not gone away and also that some of my problems were not wholly explained by ASD. After I had gone through the back catalogue I began to uncovering personal failings that I had been unaware of before my diagnosis. The lack of a remedy was frustrating and I was not prepared for it with a collateral support network.

That said, I am happier with the diagnosis than I would be without it. It has resolved a lot of confusion, even as it has given way to some. To look back on my experience without this knowledge is like looking into another world and I am glad not to suffer the delusions that beleagered me then, even though I am stuck with an incurable condition.



Last edited by collingford on 05 Jul 2018, 9:36 am, edited 4 times in total.

HistoryGal
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05 Jul 2018, 9:03 am

It's possible the psychologist made a mistake. They aren't infallible.

Unlike cancer or diabetes, there is no physical test. AS is diagnosed based on a collection of symptoms and the psychologist's own interpretation thereof. Also if you make the appointment with the intention to get that diagnosis, often a bias is present. If you're looking a said object, often suddenly everything is a blue said object.

Just don't question it and hold on to it if it helps you.



Roselove
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05 Jul 2018, 11:44 am

Jensen wrote:
Hi!
In many - or most ways, this sounds like me. I got my dx at 60 - now five years ago and I also felt an intense relief. At last, I had a valid explanation for my life.

Please don´t have an issue about being relieved to have been diagnosed!

Of course, you can say, what others have been saying about you. Being autistic doesn´t make you that alien.
....and yes! Women are that good at hiding it - and some men as well.
Autistics can be very good actors - such

You probably spent your life observing and acting, hoping to "get it right", say the right things in the right tone with the right face on - hoping to blend in.... and you have become very skilled (most of the time).
It was those skills, your caseworker saw - and took for non-autism. Most people have a pretty rough ideas about autism.

Your brain is wired somewhat different from those of most people. That´s all. Enjoy your relief :heart:


Yes, I agree with this! I had to adapt a lot. I didn’t understand physical/social boundaries in relationships and the stuff I mentioned in my post. :)



Roselove
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05 Jul 2018, 11:52 am

HistoryGal wrote:
It's possible the psychologist made a mistake. They aren't infallible.

Unlike cancer or diabetes, there is no physical test. AS is diagnosed based on a collection of symptoms and the psychologist's own interpretation thereof. Also if you make the appointment with the intention to get that diagnosis, often a bias is present. If you're looking a said object, often suddenly everything is a blue said object.

Just don't question it and hold on to it if it helps you.


I was thinking about this and remembered that my mom and husband had to fill out detailed info about me to, since it helps get an unbiased perspective. There was a ton of info that we all had to give and I did a bunch of different tests, including cognitive and it lined up with Autism symptoms. My visual processing speed was in the “Very superior” range, but my auditory short term memory was in the “Borderline range” (bad, basically lol).
There were two doctors working on my case, as well. One was a new doc getting experience I think, but still was a second opinion. The main doctor specializes in Autism and has a very good reputation, too.
Idk, maybe I’m worried for nothing. I just get anxious sometimes, especially if it jeopardizes something that helps me emotionally. :|



HistoryGal
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05 Jul 2018, 1:36 pm

You're here where you belong. Relax.



isloth
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05 Jul 2018, 3:06 pm

I don't think you should concern yourself too much over the matter. All people are wired differently in the brain and are unique. There is a fine line between mildly on the Autism Spectrum and just "shy and introverted and quirky NT", which side of that fence you are on isn't what's important. Either way, the diagnosis isn't to give you all the answers about who you are, just to hint very generally. You will still have to do the work in understanding who you actually are as an individual. Your problems come from the fact that you're different, you can be different from NTs and you can also be different from everyone else on the Spectrum, you are you. Don't think for a second that you need to have a diagnosis in order to get help, use the programs, or post on boards such as these. Don't think that only people with a diagnosis are allowed to have problems.

I am same age as you and was also only diagnosed a year or two ago. I also am on the milder end of the Spectrum, and no one whatsoever suspected that I had ASD before, primarily because my grades seemed good and that's the only thing anyone cared about. Yet, I always had problems and felt pain inside of depression even if I wasn't aware that it was different for others or the reason I felt that way. When I received my diagnosis, it really helped me to understand myself better and reanalyze events and feelings in my past in a new light that made a lot more sense. But that is just step one, knowing in itself sadly isn't the same as doing something about it or truly accepting yourself. That's the job I now have in front of me, and it's pretty intimidating.

Sorry for the long post! In conclusion, if for no other reason than it's similarity to my experiences (don't think it's just women Aspies), I think that even if you don't think you are on the Spectrum, you are very close, and the distinction is pretty irrelevant. I would just fully accept the opinion of the doctors (I'd say I agree), and move on to figuring out what it means to you personally and your future. I think the advice of the others in this thread has also been spot on.
Don't despair, good people like those in this community will support you regardless of what you are! :heart:


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Roselove
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06 Jul 2018, 8:18 am

isloth wrote:
I don't think you should concern yourself too much over the matter. All people are wired differently in the brain and are unique. There is a fine line between mildly on the Autism Spectrum and just "shy and introverted and quirky NT", which side of that fence you are on isn't what's important. Either way, the diagnosis isn't to give you all the answers about who you are, just to hint very generally. You will still have to do the work in understanding who you actually are as an individual. Your problems come from the fact that you're different, you can be different from NTs and you can also be different from everyone else on the Spectrum, you are you. Don't think for a second that you need to have a diagnosis in order to get help, use the programs, or post on boards such as these. Don't think that only people with a diagnosis are allowed to have problems.

I am same age as you and was also only diagnosed a year or two ago. I also am on the milder end of the Spectrum, and no one whatsoever suspected that I had ASD before, primarily because my grades seemed good and that's the only thing anyone cared about. Yet, I always had problems and felt pain inside of depression even if I wasn't aware that it was different for others or the reason I felt that way. When I received my diagnosis, it really helped me to understand myself better and reanalyze events and feelings in my past in a new light that made a lot more sense. But that is just step one, knowing in itself sadly isn't the same as doing something about it or truly accepting yourself. That's the job I now have in front of me, and it's pretty intimidating.

Sorry for the long post! In conclusion, if for no other reason than it's similarity to my experiences (don't think it's just women Aspies), I think that even if you don't think you are on the Spectrum, you are very close, and the distinction is pretty irrelevant. I would just fully accept the opinion of the doctors (I'd say I agree), and move on to figuring out what it means to you personally and your future. I think the advice of the others in this thread has also been spot on.
Don't despair, good people like those in this community will support you regardless of what you are! :heart:


This makes me feel better and gives me more, hope :heart:
You’re very sweet and kind, I’m sorry for the hardships that you went through :(
You and the other posters are right, I and my loved ones have always known I was different (even though some friends were surprised it was Aspergers). My family really didn’t seem as surprised, I guess because they knew me since I was very little. I’m starting to just rest again in my diagnosis, when it comes to understanding my mental/emotional struggles. And you’re right, it wouldn’t matter if it was autism or not, I’m different for some reason or another, nobody would just choose to have the struggles that I had my whole life.
Thank you for your support, I think it’s nice to talk to someone my age, too! Idk why, but it doesn’t seem to happen too frequently! Lol! :heart:
Thank you again! If you ever need an online friend to talk to, you can definitely message me! (Same to everyone else) I love making new friends, sometimes it’s hard in real life 8O